I'm Alice Sillis and my daughter Claire, now 24, was diagnosed with T Cell Lymphoblastic Lymphoma, stage III Jan, 2009. Nickname: "Chemo Claire, the Toxic Teen." Claire finished her 2 year chemotherapy protocol on Jan. 10, 2011. The Beginning: Claire left for college, August 2008, and got a cold & some shortness of breath (SOB) in October. She renewed asthma meds at the health center and was better by Thanksgiving. She had pain in her chest so went back to the campus clinic: Rx: muscle relaxer and Motrin for chest and back pain. Dx: Costochondriosis (inflammed rib muscle.) I visited Claire. She had pain & lack of sleep. I encouraged her to return to the clinic if her symptoms worsened. Finals week came and the shortness of breath got worse. She pushed on. When I picked her up, she had SOB when walking to the car. Inhaler gave relief (good oxygenation and decreased SOB).Next day- saw her doctor, RX: an inhaled steroid; return if needed. After 6 days, she had SOB after running about 20 feet from the house. Her rescue inhaler helped but I made a next day appt. My husband, John Sr., and I accompanied Claire to her appointment since we planned lunch after. John is an attorney and a former RN. Claire walked slowly into the building but didn't have any SOB.Exam-no breath sounds on left; chest x-ray -pleural effusion. Plan: emergency CT scan.
John & Claire went to the Kaiser Roseville ER. I went home to feed animals and tell John Jr. about Claire. The CT revealed a collapsed lung and a 2X golfball size mass -medialstinal (near the chest midline) At one time it was bigger but it leaked. Surgery was the next day Dec. 31, 2008. In pre-op, I held in the tears, then kissed Claire goodbye. Then I cried in the waiting room, knowing that a mass probably meant lymphoma.
The afternoon surgery was over in 3 hours. The surgery went well & The surgeon said it was probably Lymophoma. Half gallon of fluid drained in OR to reinflate her lung. Two more quarts drained in post op. Since we were RNs, they let us stay with her in post op. She kept on waking up. "Mom, Is it cancer?...(Yeah, Dr. Moore thinks it is) "Mom, I don't want to lose my hair! (asleep) "Mom, Did you thank Dr. Moore for saving my life? (Yes, we did) Mom, do I have cancer?... She coughed and cried, slept and coughed and got back to her room after midnight. Claire was told that the pediatric oncologists would treat her.
She has a type of aggressive childhood cancer (T cell LBL) that is treated like Acute lymphoblastic Leukemia (ALL.) There are less than 25% cancer cells in the bone marrow in LBL and over 25% it is ALL.The same drugs are given and the plan is rapid shrinking of the tumors. Claire had the large lymph node mass in her chest and affected lymph nodes in her armpits, neck, chest and abdomen. She had some cells in her bone marrow. She was diagnosed a few days after surgery and transferred to the pediatric ICU. The tests done included gallium and bone scans, & a bone marrow aspiration. She was in remission after the first phase of chemo. PET scan neg. No active cancer- all cancerous nodes became scars. Claire has had many side effects over the 6 phases of chemotherapy and did well in the maintenance phase after her medications were adjusted. She had 17 lumbar punctures, 3 bone marrow aspirations; 4 surgeries (biopsy, broviak insertion; broviak removal/port insertion and port removal) and 6 inpatient hospitalizations. She started outpatient chemo the last week of January, '09. The second phase chemo lowered all blood counts. She had packed red cell and platelet transfusions. She was delayed due to low white count for about 2 weeks. Interim maintenance was 4 inpatient hospitalizations with High Dose Methotrexate and Leucovorin Rescue. THE MIDDLE: Reinduction and Reconsolidation phases were intense. Dad shaved her head. She was used to the side effects from the first phase. When counts bottomed out she was very neutropenic and the result was a 3 week hospitalization in September for sepsis and a transfusion reaction lung injury. She recovered completely and started the 15 months of her maintenance phase. which was monthly lab tests; visit to see the oncologist and IV Vincristine monthly. 3/10 Dx of Raynaud's Phenomenon 2nd to chemo- nerve damage in feet affects circulation (permanent but under control.) Her hair grew in and Claire returned to California State University, Stanislaus Aug, 2010. Claire graduated with a Psychology BA in Dec. 2013, Summa Cum Laude (highest honors.) She is starting her Masters in Psychology at CSU San Marcos August, 2014.